It has been a long time since I sat down and wrote a blog post. This year has been a very difficult year. Those who are close to me know I was diagnosed with Fibromyalgia in early January.
What is Fibromyalgia?
Fibromyalgia is hard to explain to someone who doesn’t have it. To start, it’s very difficult to diagnose because there is no test that says “yep, you have fibromyalgia.” It’s a lot of what seems very random symptoms that also mimic many other diseases.
Many, like me, who have fibromyalgia went for many years (about 15 for me) with it undiagnosed. I’ve had every test in the book and no one could ever figure out what was wrong with me.
I finally decided at the end of 2017 to go see a rheumatologist because I suspected Fibromyalgia or some other immune-type disease. And I was right.
So, what is it?
The official description is: (from ACR website)
Fibromyalgia is a neurologic chronic health condition that causes pain all over the body and other symptoms. Other symptoms of fibromyalgia that patients most often have are:
- Tenderness to touch or pressure affecting muscles and sometimes joints or even the skin
- Severe fatigue
- Sleep problems (waking up unrefreshed)
- Problems with memory or thinking clearly
Some patients also may have:
- Depression or anxiety
- Migraine or tension headaches
- Digestive problems: irritable bowel syndrome (commonly called IBS) or gastroesophageal reflux disease (often referred to as GERD)
- Irritable or overactive bladder
- Pelvic pain
- Temporomandibular disorder – often called TMJ (a set of symptoms including face or jaw pain, jaw clicking, and ringing in the ears)
In other words…..it sucks!
There is no cure, you just manage the symptoms.
Fibromyalgia and My Life
I immediately started taking different meds (gained 30 lbs) and researched a ton. There seem to be stages of fibromyalgia and as you go through each stage, you get worse and worse. That is why I wasn’t diagnosed for a long time. How long you are in each stage is different for everyone.
I’m in stage 3 which is described as:
You are in constant pain, you are constantly tired, you wonder whether you will be ever able to function normally again.
I have good and bad days. If I have a day where I do a lot, I know the next few days will be painful. I plan accordingly. I just wish the rest of the world would follow my Fibromyalgia schedule.
Fibromyalgia & GERD
Right now I’m dealing with very painful GERD and a hiatal hernia. I’m scheduled for surgery in December, but I need one more test to confirm a few things. If things come back negative, then the surgery won’t happen and I’ll be back to square one trying to figure out what is wrong. (story of my life)
My Blog Going Forward
I’m sharing this because writing about chronic illness and pain will be a big part of my blog going forward. I’m still going to write about technology. If it weren’t technology, I know my life would be a lot different and I would feel very lonely.
I feel like I’m coming out of a fog. This whole year has been a blur and I spent a lot of it in bed. I don’t want 2019 to be the same.
2019 Will Be Different
Goals and plans for 2019:
- I will be back blogging full-time
- We are starting a family blog/vlog
- I will be adding a lot of video. Sometimes video is easier to do than get my fingers to type.
- I will be writing about my fibromyalgia and chronic pain journey
- I’m starting a bullet journal and I will be writing about it too. I’m taking you on the journey from the start…
- There will still be a lot of tech on this blog. I love technology and it’s a big part of my life. That won’t change.
- It will be real! If I’m not feeling well and I want to share that with you, I may do a video of me laying in bed talking about how I feel. I don’t plan to hide how I feel. I hope to help others be ok with this new normal. So plan for some reality!
Lucy Fink on YouTube
I’m going to leave you with my latest find on YouTube. Lucy Fink of Refinery 29. Lucy makes me very happy. I’ve been watching all her videos for the last week. She inspires me to try new things. She makes me laugh. She makes me smile.
She has a series where she does 5 Days of …. a lof of different things. This one is her 5 Days of Bullet Journaling. It’s not what got me started on Bullet Journaling, but I found her because I was searching for bullet journaling videos.
Hope that makes you happy!
Let me know what you want to know about Fibromyalgia, chronic pain, chronic illness or anything else. I’m here to help you! Here is to a healthier 2019.